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I Have not seen any--thats a good time Deanna

Hi I have not posted in awhile either. Anthony is doing very well on Topamax 25mg twice a day and Augmentin 500mg twice a day. Pretty much tic free except for small ones that only a mom would pick up on. I guess I am wondering when do you start weaning. and if on antibiotics which one would you wean first? glad to hear everyone is doing well Deanna

Thanks for all the responses. I do not meet with Lyme doc till mid July--thought I was going crazy. Can you take anything for this?? Deanna

Hello, when do you decide its a good time to start weaning antibiotics?? Deanna

Hello. I have every test to man done but I am still having very strange and painful skin sensations it feels like my skin is burning on the inside. I Have had Lyme tests done and tested for some coinfections but I am hearing that Quest lab is useless with testing for Lyme. I am not meeting with Dr, till mid July. Has anyone every had these sensations?? thanks so much. Deanna

Hi Colleen, I believe she does. Deanna

Looking back I think Anthony first started with some mild behavior things that I thought were just developmental then he started with eye rolling and blinking, clearing throat and then head tics. The topamax took a few weeks to work but he has done very well, Anthony is also allergic to peanuts. I have stopped all yogurt and we will see what happens. Deanna

Yes they all do! we stopped the yogurt and will see what happens he loves his yogurt and I do remember stopping this at one point when his tics were really bad. I guess you get in a good place and your kinda like ok go ahead I mean they are just kids sometimes its so hard to limit everything. But I was thinking and I was like why am I giving him the yogurt that has the s. Thermophlius when that is the same things that it is said to cause PANDAS light bulb when off Thanks for the feedback. Deanna Milando

Thanks is that the only antibiotic your daughter has been on? Thanks for the reply/ Deanna

Hello Everyone, I have not posted in a while because of some personal health issues but have checked in from time to time. Anthony saw Dr. Latimer at the end of August we started to wean down the Topamax but he did not tolerate this so once we went back to our original plan he has done wonderfully, He is on Topamax 25mg twice a day and Augementin 500mg twice a day. Over the last few weeks he started clearing his throat again I ignored it which in itself is a big step for me. He started then with his head tic. Once Anthony came and spoke to me about it we started with the epsom salt baths and some Magnesium Replacement. I guess my question is do you think the change of season could be the cause of the flare up. I guess I get so scared that we will go back to the time when his tics were awful I need so reassurance that this is a just a flare up or does anyone have any other ideas. He has got back to eating a lot of yogurt and not sure if this could be the culprit. Thanks any feedback would be greatly appreciated. Deanna

I am watching Oprah and thinking the same thing didn't know any background on the show just started listening while I was tinkering on the laptop then saw Oprah interviewing him and the first thing I thought was PANDAS. Deanna

Hi, I don't think Myrose has posted in a long time. I even tried sending her an email but got nothing back. My son is on Topamax and Augmentin--may try weaning back on the Topamax after we see Dr. Latimer I have not noticed any adverse effects he has just been on it for awhile it works well. Deanna

Thanks for sharing we see her as well and your description was very accurate. So glad you are now on the right path with your daughter. Best of luck on your path to healing.. Deanna

Hi, we see Dr.Latimer as well very happy with her. Deanna

She lives in the NOrthwest Corner of Ohio! Deanna

Thanks so much!! Deanna

Hello, Just found out of someone whose son sounds like PANDAS in ohio, if anyone knows any Doctors in Ohio that could help that would be great. Also wanted to know if anyone had Dr. Triflettis and Dr. K's--thanks everyone. Deanna

Dr l is Dr. Latimer she is in Betheseda Maryland 301-530-9200 Deanna

Is the vaccine for menigitis a live vaccine? Deanna

meningitis,chicken pox, and diptheria, tetanus and pertussis. Deanna

Hello, Just sent Dr. Latimer an email telling her Anthony is due for his shots--he will be 11 next week. She said to get the shots and space them one month apart any thoughts. Deanna

I hope everyone has a safe and Happy July 4th Holiday!! Deanna

I think if the titers are high than you do not need to be revaccinated. is this right?? Deanna